Jillian (Jilly Bean)

Jillian is 2, nearly three. She was diagnosed with ALL on 12/23/11. Just two days before the most magical day of the year! I'll never forget that day. We thought Jillian had a cold. She went to a regular sick appt at her pediatians office. Something just wasn't right...bloodwork...admit...NICU... DIAGNOSIS. It was madness and happened in a matter of hours. The doctors told us she wouldn't have survived 24 more hours. 

Enters..Dr Razzouk. 

Now, her life  is...many pokes, many chemo days, long office visits, a new diagnosis due to toxicuty from chemo drugs, numerous days of inpatient stays at Peyton Manning Children's Hospital..with many more days to go...over a two years of total treatment! ...Not to mention all the continued care she will have to endure! But, WE ARE STILL STRONG! 

Jillian amazes us! Our hero! 

Find A Cure! Be Aware! 

To follow our journey... 

www.caringbridge.org/visit/jillianmiller

Follow her on Facebook.. Jilly Bean and the Fight of her Life 

Also, google search: Jillian Miller Indianpolis Star Jan 2012 Cover Story

Zachs surgery

Just wanted to post a quick update about zach. His surgery was suppose to take 3 hrs, ended up being 6!! I was anxious and worried around the 4th hr. simply out of my mind by the 5th, and ready to come unglued by the 6th!!
Finally the doc came out and said everything went well, just took longer than expected because they wanted to be extra careful with the facial nerves. Plus he had what we thought was a fatty tumor removed from his forehead, in fact it was not! It was a sebaceous cyst. It took doc over an hour just to remove that!!! He said it had grown all the way to his skull and was branching out. Ewww!!! That's gonna leave a mark!!! Doc also said nothing looked suspicious, but they are sending it all off to pathology to be sure. Not sure how long before that comes back.
They also had a heck of a time managing his pain, plus they gave him zofran, we forgot to tell them he reacts badly to that. Didnt know it was a drug they were going to give him. So he was horribly dizzy. After they gave him all the pain Meds that they could, we came home.
He was in tons of pain all night :( we had Vicodin, but he could only take it every 4 hrs. Around 11, I was headed to bed (he had to sleep head up in the recliner), he ended up throwing up for a while. I felt horrible for him. It was all the Meds and no food. But everytime he tried to eat, his salivary glands would kick in overdrive causing him more pain.
Today, we go back to see the doc. Originally, it was to be Friday, but since the cyst on his head was so deep, he wanted to see him today. As for healing time, doc said it would take him around 6 weeks!!! Wow!! And during that time all sorts of fun nerve crap will happen. I'm sure pathology is fine, but as soon as I find out, I'll post it!! Thanks for all the support yesterday! Oh and did I mention, it's dex week!! Ha!!! Fun fun!!

Update on the Weber's

I've been trying to publish a featured child each day and that is all I want to publish for the day so as not to "take away" from their limelight, during this month, I have been pretty busy and missed a couple of days, and we have had a lot of family things going on.  I thought today would be a good day to update on our situation, Lucy, and then continue tomorrow with two kids a day for the remainder of the month.
We have definitely had some major things happen in the past two weeks.  I had posted earlier about Zach and his "salivary stone".  Well, we went in to talk to the surgeon last week and get a CT scan so that the doc could see exactly where the stone is, and what he is dealing with since this particular area is crowded with facial nerves.  Not a stone..it is in fact a tumor.  The doctor said he didn't think it was malignant, but there is a 30% chance that it is.  30% is a HIGH percentage to me!  especially when the chance of Lucy getting cancer was so low.  We don't believe in percents, for obvious reasons.
Anyhow, we are pretty stressed about this.  So even if it is NOT cancer, here is what Zach has to look forward to:  partial paralysis in the left side of his face for a period of maybe 2 months (maybe longer, hopefully not for life).  Droopy face, no salivary gland so dry mouth all the time. Eventually the other glands will make up for it, but that too, takes time.  If the surgeon does NOT accidentally cut a nerve (mind you his tumor is literally surrounded by nerves and the nerves wrap around it), there will still be so much pain and trauma done to the nerves that it will take a long time for them to heal.  Never mind if the nerves are cut.....we aren't going there.  We also don't know how long the surgery is going to last, then we have to wait awhile for them to send it to pathology to see if there is anything to it.  So I think right now just the fact that we are dealing with this type of stress is absolutely enough to drive us insane.  I mean really!  He was fine!! nothing....then one day, he got a lump in his neck.  Out of the blue.  And it seemed to happen as we felt our life was returning to "normal".  Mind you its our new normal, but we had begun to accept it.  Every time we seem to get comfortable, something slaps us in the face.  Is it not enough that we have accepted our fate as parent's of a child with cancer that we also have to deal with a dog that has a mysterious disease and now this??  If its cancer, we are moving.  Not sure how! lol But we will deem this the cancer house, and move. Irrational?? maybe....maybe not.  But I sure as hell am not waiting to see if Jack gets a form of cancer or myself.
ok...so update on the rest of the Webers:
Lucy:  LOVES school.  I am so glad we decided to send her.  While we know we may have a few more inpatient stays than if we kept her home, we weighed the pros/cons, and really cannot keep her locked in a bubble for the next 45 weeks (that's how long we have left of treatment).  And she really needs this interaction with her peers. And if you see how her face lights up when she talks or "plays" school, you would understand our contentment with the decision.
Jack:  well, he loves his teacher.  lol  but still doesn't like school.  I have to accept the fact that he is not going to be the rock star student but average, and I am..slowly...Jack is Jack.  He loves to do what he wants, and will groan and growl at what he doesn't like and do it, but not at 110%.  And that's ok.  Not every person was meant to be good at school.  He is still very bright and so funny.  And he already knows at the ripe age of 7 that he is going to do what he wants with his life and what makes him happy.  That is something I didn't learn til I was 35.  For that, I am proud of him.  Actually, I am proud of him for everything.  He has been through a lot and still manages to make us all laugh.
Taco:  Losing weight (which is good, he's on a diet).  Seems to have good numbers on his CBC.  So we wait.  We wait to see if its an autoimmune disorder or if its cancer.  If it is, in fact cancer, it will return...just don't know when.  Steroids are known to put a blood cancer in remission.  Sometimes for a short time, sometimes 6-12 months. But he is back to his old self and sleeping on my feet again ;)
Me:  I am ecstatic to have my book published both on hard copy and kindle.  And its so cool to see my name in print.  Funny thing:  I published a book that I couldn't even read after I wrote it!! lol  I got to chapter 3.  I am also trying to adjust to the fact that come January, I go back to the office.  Part of me is ready.  A break from the house.  Part of me is terrified.  Separation anxiety is already kicking in when I just think about it.  I will make sure I have lots of good drugs before I go back.  My doctor even told me we could work something new into the mix while I adjust those first couple of months.
So...for now that is an update on the Webers.  Surgery for Zach is Wednesday....guess what...Steroids for Lucy starts Wednesday!!!  If I were you, I would NOT want to be me this week!!! ha!

Cheer Sam on!!

From inside the womb he was an active boy, born May 2007 full of energy and loved instantly.  By the age of 4 he loved sports, the outdoors, learning anything, and family time.  In October 2011 Sam spent every other week at the new pediatricians office always diagnosed with a case of strep throat it just wouldn’t go away.  Excited for Christmas at our house we made it thru the day but he was just not himself.  New Years Day came and went and I knew this was just not my son.  I noticed what I thought was a rash and the doctor thought was eczema, it looked like little pin marks all over his face mostly.  He was bruising easy, very pale almost greenish, and wanted to go to bed right after school, Sam never wanted to sleep before 11 since he was born.  He was barely eating anything not even McDonald's one of his favorites I knew something was wrong.
        The morning of January 4Th I called the doctor again and I said he just not right not eating, not drinking, and always weak.  They sent me straight to the ER it was about 9am, my biggest fear was he was dehydrated.  Hours past after the blood work and by 2:00 we had an answer.  Dr. P walked in and said “I’m sorry to say but your son has leukemia” I was in shock and my husband fell to the chair.  At this moment our lives were going to change forever.  The wait for answers wasn’t over there are a few types of leukemia and different risk levels of each, it could take days for some of those answers to return.  By the end of that night Sam had an iv in each arm, had gotten blood and platelet transfusions.
        Sam started treatments the next day first of which was his first of many to come spinal tap and bone marrow. In the first month he would have them done weekly he was put under so to not feel the horrible pain of a needle entering your back and into your bone.  During this month spent at the hospital he had x-rays, ultrasounds, and a PICC line placed (PICC is an inserted more permanent iv line). Thankfully all his meds and transfusions (which he needed a few of each) were thru the iv. During this time he was neutropenic and anyone who came to see him had to be completely germ free and wash hands immediately upon entering the room, if Sam left his room he had to wear a mask he was no contagious he just had a 0 immune system.  Towards the end of the month Sam had to learn how to take meds orally (very hard task since birth) and we were discharged after about 4 weeks stay inpatient.  Clinic was next step for treatment weekly but that was only place other then home he could be.
        During the month inpatient he developed an allergic reaction to at the time we thought was from an antibiotic but didn’t want to clear and had to call in a allergist. Sam was unhappy being poked and listened to , blood pressure, temperature by so many doctors so many times a day.  We also received the results of his leukemia type, he had ALL (Acute Lymphoblastic Leukemia) the best type to get if you had to get it. It is the most treatable and curable type, but we still had to wait to see if he was high, average, or low risk to tell which treatment type had to be done.
        February 14th he underwent his first real surgery, he had the PICC line removed and a Port placed (an under the skin access to his vein) he could now swim and bathe without worry of a tube hanging out.  Now the trauma of a needle poked at your chest each time you need treatment or blood drawn.  He was able to finally return to school with much caution by the last week of February.
        Here we are now June, Sam just turned 5, and seems to be doing good. We have had few set backs but many little complications along the way.  We have a long journey ahead, his last day of treatment with the help of prayer for no relapse is to be March 7, 2015.  That is no typo he has 3 years of treatment, he is considered in partial remission due to no sign of leukemia cells but until we hit 5 years with none he will not be considered cured of the disease.

Porter ~ don't sweat the small stuff ;)

Porter has always been a loving, sensitive, smart and giving kid. He socializes well with adults and gets along with most kids. He has at times been the target of bullies because of his sensitivity but at the same time he's the kid that can break a bully. He always wants to give to charities and is always looking for ways to help others. Last year we did an American Cancer Society Daffodil Days at the Day Care I worked at. Every day he asked when we were going to buy our daffodils and I always put it off, I was busy and in a hurry to get through my day. On the last day I replied to him, "We don't need any more daffodils, Porter, we have a whole garden full of them!" Porter looked at me, with the saddest look ever and said, "You don't get it mom, do you? It's not about the daffodils, it's about helping people with cancer!"

Six months later Porter came home from a weekend at his dad's house looking very pale. I was slightly concerned but we are pale people and it was October. I just made a joke about him maybe being a vampire for Halloween. The next day, Monday, he came home from school and said he'd felt dehydrated in gym class. The teacher sent him for a drink at the water fountain but somehow, he ended up at the nurse. He had a slight temperature, 99.9 but it wasn't high enough to send him home. By the time I got him home that night he was at 101.1. I just figured he was coming down with something so I asked my mom to watch him the next day so I could go to work. I also made a doctor appointment, just in case it was more than a cold or virus.

My mom took him to the doctor on Tuesday and he still had a fever and was a little pale. Strep was going around, so they did a strep test and sent him home. He saw a doctor he hadn't ever seen before because his doctor was booked. A lot of kids were getting sick at this time of year, it was the week before Halloween. The strep test was negative but his fever continued so he stayed home with my mom again on Wednesday. Thursday morning he woke up really early and was screaming. His head, belly, legs and arms all hurt. Badly.

We rushed over to the doctors and once Dr. Dimik saw him he knew something was wrong. He called in another pediatrician for a consult and they kept pushing on his belly and around his neck and ears. I had no idea what was going on but when they were done they asked us to go for some blood work, to rule out a few things...like anemia, mono, some virus I'll never remember the name to and leukemia. I asked why we were testing for leukemia, I was terrified. He only had a fever. Dr. Dimik told me we were not testing for it, just ruling it out. I knew at that point before we went for the blood test that he had leukemia. As soon as the doctor said the word, my mother's intuition took over and I just knew it. We went to the lab around 1:00 and by 6:00 we got the call that the results were in and we needed to be admitted to the hospital and meet with some specialists.

On October 27, 2011 we checked in to Lehigh Valley Cedar Crest and Porter got hooked up to some IV fluids. It turns out that his hemoglobin and platelet levels were dangerously low, I knew nothing about the numbers they gave me that night, I just believed everything they said. Now, ten months later when I look at the lab results from that day, knowing what I know now, I realize he was so sick and can't even imagine how he was getting from day to day. He received transfusions immediately and in the morning they did his first spinal tap (to see if the cancer was in his central nervous system) and a bone marrow aspiration (they stuck a needle into his hip bone to withdraw bone marrow to see what kind of leukemia he had) and started chemo right away.

Porter was very lucky. We found out he has Pre B cell Acute Lymphoblastic Leukemia (A. L. L.). This kind of leukemia affects 75% of kids diagnosed with luekemia and it has an 80-90% cure rate. This mean he has an 80-90% chance of beating the cancer and having it never come back. But his treatment would be long and tough. When leukemia comes back, it often comes back in the central nervous system, so we learned that he wold have somewhere between 20-30 spinal taps over the course of his treatment to first test the spinal fluid for cancer cells and then to inject a kind of chemo to prevent it from getting in there. Also, it turns out that in boys it can often relapse in their testicles. So a boy's treatment is longer than a girls. Girls generally are treated for about 2 1/2 years, boys 3 1/2. This meant that since Porter was diagnosed a few months before his 9th birthday he would finish treatment around his 12th birthday!

So far the treatments have been crazy, some parts are more intense than others. He was initially hospitalized for 12 days. In November he got an infection- the chemo works to kill the cancer cells but also knocks out most of his blood cells and really compromises his blood cells (red, white and platelets). He has had around 15 blood and platelet transfusions at this point. That time he was hospitalized for about a week. He's gotten a few other infections since and has been in the hospital about six more times, the length ranging between four days and two weeks each time. In March he got really sick and turned septic.  He had to spend several days in the PICU. He had three different infections and no immune system. His blood pressure crashed and he almost didn't make it. But the moral of the story is, he's a tough kid and fought very hard the whole way so far.

The day we told him he had cancer, I was so afraid of what his reaction would be. He simply said, "I have cancer? So what do we have to do to beat it?" He is so positive and always has a smile on his face.  When he lost his hair he thought was the funniest thing and declared he really liked to be bald. Now it has grown back and it's blonde instead of brown. He makes friends with the new kids at clinic and always tries to help them through the hard times. He is always looking out for everyone else.

Before cancer, he played baseball, took karate, was in boy scouts. We had to quit almost everything because he was too sick to participate. He looks forward to next year when he can go back to the things he loves. He has participated in a clinical study, he had the choice, because he hopes that they will learn something to help another kid.

He has always been such an amazing kid and I only see that getting bigger. He's only asked me once why I thought God gave him cancer and I could only reply, because he has something great planned for you! He must want you to take this experience and help others. 

It's been hard but we've done it. We've had a lot of emotional and financial support for our friends and the community. It's been amazing. I lost my job in November, I had to be with him and wouldn't go to work, they held my job as long as possible but couldn't do it any longer. I feel so fortunate to have been able to take care of him while he was ill and really feel like God was sending me a wake up call to tell me I worked too much and needed to be there for my kids more.
 
Now that Porter is in maintenance we are experiencing all different sorts of emotions.  We have to get used to all of the pill dispensing, there are tons of chemo pills to take on a daily basis.  So far his numbers have stayed high-and of course we are just waiting for them to crash.  He is still on study and got the ARM with the highest dose of chemo, and so far he's still on 100%.  We have learned to take life one day at a time and not to sweat the small stuff!

Positive Attitude = Noah = win win!

Our Journey begins with Hope!

On May 12, 2009 Noah was diagnosed with ALL-Leukemia and our life was changed forever. I say ‘Our Journey' because Noah's Battle is my Battle too!

He is the Super Hero & I am the sidekick We went from trips on the weekend to complete isolation. From Noah's hair growing faster than I could cut it to handfuls falling out on the pillow.

We have been very blessed throughout this journey despite Noah's toughest days when I break down and ask... Why?

I don't think I will ever understand why this has happened during my time here on this earth. I can only guide Noah where to look to during it ALL.

So …with that we choose to believe that God has a plan for us and we find our HOPE in him every single day!

Noah always says when my Leukemia is over, he looks at this as an obstacle in his path & believes that he will win! Tunnel vision is what I refer to it as. He is focused on a goal of remission and chooses to always look ahead.

I can't make this shit up!

Ok, so we have been so busy with school starting, doing the weenie cart, I started a new Posh business, and of course my book being published.  Lucy has been well, and almost...."normal", which I knew I shouldn't have said out loud!  I totally jinxed us when I said that the other day.  We are finally settling down, determining a plan for me to enter back into the work force (actually working from the office) in January, Lucy is in school 1/2 day, Jack is loving 2nd grade....right on track....well, unfortunately, our train derailed a bit today and is going to be stuck in no mans land for a few weeks.
On Friday, Zach's left ear started to swell.  Looked like a swollen lymph node.  No worries, he had a cold, so we chalked it up to that.  He worked the hot dog cart all weekend, and by Sunday morning, he was in excruciating pain.  I told him he better go to the doc in the box in case he had the mumps or something that could affect Lucy and be contagious, so he did.
He came home with a box of lemon heads.  Yes, lemon heads.  I said "What the hell?"  Well, apparently, he has a stone in one of his salivary glands and in order to pass it, you must produce a lot of saliva, thus the lemon heads.  STONE IN WHERE??? we had never heard of such things.  So we googled it.  Don't do that.  I would not recommend you ever google anything that has such graphic pictures! Ow!  So he was suppose to pass a 1/2 inch stone through this tiny pin point duct.  Not gonna happen.  He sucked on lemon heads til he about passed out from the pain.  He even drank vodka tonic to help his through it, as they would not give him any pain meds.  Know why??  Remember when he accidentally took my antidepressants and not his own?? well now on his health record, he is listed as an accidental drug overdose.  Does it say what drug? NOPE!  Nice huh??  We had a chuckle over that.  So yesterday, he said "I cannot deal with this anymore, I am spitting up blood, and I cannot eat". So he made an appointment with an ENT.  We thought a dentist, but we were wrong. They said that they could get him in on Wednesday.
Last night, he couldn't eat, and every time he smelled food, he would salivate, so that made it painful.  He said what is the point of not eating, if I salivate anyhow?  So last night, he commenced on sucking on lemon heads again...to the point where his mouth and lips were numb, and so was his ear.  We decided that could NOT be normal.  When he woke up this morning, he immediately starting calling all ENTs in the area to see if somebody could see him today.  He found one.  And went in.....
So, this is the part where I can't even make this shit up.  Yes...yes..he does in fact have a stone in his salivary gland; however, it is not in a spot that can be taken out with a scope (of course its not, that would be too easy).  So how are they going to get rid of it? Well...they are going to slice a horseshoe around his ear and remove part of the entire gland.  The gland is a goner.  And that isn't even the most exciting news!  It is intertwined with the nerves in his face and ear, so he will lose feeling in the lower left ear, forever.  And there is a small chance of paralysis for his face.  Not common...but 2% chance.  And he will be down and out for over a week.  He goes in next week for surgery.
Yes, life was getting to be normal......sigh.....how silly of us...we are the Webers, nothing is normal

OMGoodness....if this smile doesn't melt your heart!!! Meet Bella

This is my little girl Bella. She will be 3 on October 2nd. On June
26th she was diagnosed with ALL standard risk. We spent all of
induction in the hospital minus 6 days for a few very serious
infections including one of the port and a positive blood culture. On
day 29 her MRD came back positive. A very high .86. So now she high
risk. She has a little sister who just turned one that she adores and
will do anything for. We live in Phoenix AZ and go to cardons
childrens center. Her blog is ddbhernandez.blogspot.com
And her fb page is Bella's love heals A.L.L.

Leah "Hope" Scallions- the name says it all

Our baby girl was born on July 28, 2007. Our first shock was that she had Down Syndrome. Our second shock came on February 28, 2010. She was diagnosed with standard risk ALL (Leukemia) at 2 years and 7 months of age. Leah's diagnosis was very quick. She had been very irritable for about three days. We had assumed it was teething due to the fact she had approximately four teeth coming in. She began hurting even more and everywhere. It was getting out of control. She was also running a fever. We noticed that she was very unsteady with standing and dragging her right leg when she was trying to walk. We took her to the ER around 9:00 AM on Sunday, February 28, 2010. We got a preliminary diagnosis, and they transported us to St. Jude. We arrived before 4:00 PM. They began IV fluids and giving platelets that night in order to perform surgery the next morning. On Monday, they added a Hickman line, did a LP, and ran a BM. She began chemotherapy Monday night, March 1, 2010 around 10:00 PM. She is scheduled to complete her treatment plan at St. Jude on October 19, 2012 with her last dose of home chemo to be given 12:00 AM October 26, 2010!!!

Our Beautiful Friend...Emma Grace

Our lives were forever changed on December 17, 2009.  Several months before, Emma Grace had come down with strep throat, then severe diarrhea/flu, she often complained about her legs hurting her…all childhood issues, or so we thought.  Finally, on the Wednesday before Thanksgiving we were very concerned with her paleness and lack of energy and called her pediatrician.   They did a CBC, Emma’s hemoglobin was 2.7, 10-12 being average.  The doctor told us to get her to the emergency room ASAP.  Emma Grace stayed inpatient throughout the holiday weekend and was diagnosed with Parvo Virus, her CBC gave no indication of leukemia at that time so no Bone Marrow Aspiration was done.  She received 6 blood transfusions and was released on Saturday with a follow-up on Monday at Mercy/St. Jude Affiliate Clinic/Jane Pitt Pediatric Children’s Hospital.  For the next three Mondays they continued to do CBC’s, Emma Grace’s counts continued to drop again, and in other areas.  We were informed they wanted to do a Bone Marrow Aspirate on Thursday Dec. 17^th, with several possible things they would be looking for, still leukemia was not one of them; however the others were far worse. 

At 3:30pm on the 17^th, Emma Grace’s doctor called Mark and I into a separate room, we knew the news would not be good.  We were told there was good and bad news, the bad news was: Emma has Acute Lymphoblastic Leukemia.  Our hearts ached, we cried and listened to her wonderful Dr. say how sorry she was and so shocked with the results.  Then I remembered she had said she had good news…Leukemia is 94% curable.  What Emma was diagnosed with was so much better then what they were looking for originally; it was a much better diagnoses for Emma Grace.  We were given options on treatment, and asked Dr. for her recommendation:  St. Jude Children’s Research Hospital….and so the journey began.

We were transported to St. Jude late in the night, arriving in Memphis at 5:30 am on the 18^th.  Her surgery and first chemotherapy started on Dec. 21^st, 2009.   Emma was put in remission just 7 weeks after diagnosis but Leukemia patients must finish the protocol treatment to avoid relapse.  We are so blessed to have Emma being treated at St. Jude and even more to have a local St. Jude Affiliate right here in our own backyard.

After 2.7 years of treatment, 3 hair losses, too many needle pokes to count, over 7 different chemo’s, 2 surgeries, many ultrasounds, ct scans, MRI’s and 18 procedures… Emma Grace finally finished treatment on July 10, 2012.  Her sub-Q port was removed  August 28^th  and her Make-A-Wish will be granted Sept. 17^th, 2012 to DisneyWorld.

She literally skipped out of the hospital saying she felt like a normal kid! We will forever bring awareness to childhood cancer until there is a cure in honor of all her friends that never had the chance to skip out of the hospital and be normal.

Emma Grace Heppner and family

Beautiful Isla is kicking cancer to the curb!

Our precious daughter, Isla Adele Murphy has been fighting Pre B ALL- High Risk since the 11th of April 2011 when she was two weeks of 4 years. After 10 months of aggressive treatment she is now 5 and three cycles into LTM- with just over a year left of treatment. It has been a bumpy road to say the least but everyday we wake up to her smiling face we will be grateful for everything we have.

Whoop Whoop For Dylan!! Keep on Fighting

Dylan was diagnosed with Pre-B A.L.L. on March 18, 2011. He was 2 1/2 years-old at diagnosis. We learned he was in remission just over a month later, on April 24, 2011. After a rough 9 months of intensive chemotherapy. he began Maintenance in January of this year. In addition to ALL, Dylan also has a diagnosis of Autism. This sweet boy has endured (and continues to endure) so much yet he still has a smile on his face each and every day. He and kids like him are so inspiring! While I am glad Dylan is in Maintenance now, he's not even half way through treatment after 17 months of chemotherapy. 

Please pass me a cape and some Popcorm (n)

Sometimes, I go back in time through pictures or videos to when both of my children were babies.  It was such a special time, and I love to see their little faces or hear their voices before they fully learned to talk.  Then....I try to take a shower, and I am reminded how wonderful it is to have them just a little bit older and independent.  I can actually TAKE a shower longer than 3 minutes and most of the time, I can even wash my hair or shave my legs.  Not both...unless Zach is home.

But while I like that Jack is old enough to get up on his own and make breakfast, or Lucy can ...ok well Lucy can never be left alone, regardless of age, but at least I get to sleep in now that Jack is older.  He is my early riser.  Usually 5 am.  But now, I get to sleep til 6 because he can make his own bowl of cereal.  Just the other day, when I woke up, I found him eating a bowl of cereal he poured himself.  Now, it was Jethro bowl..aka HUGE.  And he used half gallon of milk on it, and is slowly cutting out Toucan Sam on the box as he gets down to the bottom, BUT...he did it all himself, and I got that blissful hour of sleep.

I have to admit, I do miss his kisses and cuddles though.  He's too big to sit on my lap and kisses from mom are gross? But every once in a while, I catch him trying not to grow up too fast.  Like when he is having a war with his army men in his room.  Or today, when he put on his super hero cape (that he said was for babies) and went outside to dig up worms.  But that was short lived.  An hour later, he was going to the bathroom and covering his penis.  I was like "well, you do know I have seen that before?  And if you don't want me to walk by and accidentally see it, why don't you shut the door before you pee?".  His face got all red. I bet he learns to shut the door from now on.  

Then there is Lucy.  Its a little bit different with Lucy for a couple of reasons.  First, she is our baby. Our youngest.  We cherish everything every last thing she still does due to her immaturity.  We hold on to her mis-pronunciation of words (tummy egg, PopcorM).  And then we also "lost" a year of her babyness to cancer.  So it was like her entire 3rd year of her life, she grew up in a matter of days.  Sometimes, we see that 3 year old in her.  It like she missed out on those years and tries to throw in a fit of independence here and there.  And while the "3's", I believe are the worst times for the parents, I welcome it from time to time from her.  

The other thing I have learned to love is the bathroom.  Not the one with the shower, but the one with the tub and lock on the door!!  Sometimes I go in there and hide.  Sometimes I turn off the lights, light a candle and escape with a bubble bath (but I only do that when Zach is home or the kids are sleeping).  But I have found that I have grown to love my 1970's bathroom.  Sometimes, I eat in there.  Usually that is steroid week when I am trying to sneak food without Lucy seeing it.  

So while I miss the baby days from time to time, I really do enjoy more baths, an extra hour of sleep, and the glimpse I get from time to time when my children are pretending to be superheros while eating popcorm ;)   

Meet Payte!!

Since September is Childhood Cancer awareness month, I am going to be featuring a new child (ren) each day!  The unfortunate thing about this, I was able to fill all 30 days with a child with cancer, and could have even filled each day with much more :(  Be aware! Gold Gold for the kids.

This is Payte. He was diagnosed October 13, 2010. He had not been real sick prior to be diagnosed. Looking back he had some weakness along with pain in his knees and back. We shrugged off the pain as growing pains and football injuries. A week prior he had got real pale and spent the week with Grandma. When the kids came home he was still pale and very weak. I took him into the pediatrician on Tuesday evening they did a quick finger poke and his hemoglobin was down to 5.6. They immediately called the hospital of our choice. And of course I asked where would you send your kid so they called Cardon Children's hospital. After doing several uturns trying to figure out if I was picking my daughter up from practice or going to hospital I had another parent take her home and we drove to hospital. They sent us straight to the 7th floor, Oncology. The doctor came in and met us there. The next morning he came in again and asked to speak to us in another room.....our lives were changed forever with his words.

Give it up for Rett!!!!

Everett (Rett) is an amazing five year old who was diagnosed with pre B ALL January 2011 after low grade fevers and colds throughout the last few months of 2010. He has spent 36 days inpatient and even more days feeling ill, but he is kicking cancer to the curb, one leukemia cell at a time. Did you know that he had approximately 1 billion leukemia cells at the time of diagnosis? He went into remission about a month later, but still had about 1 million cancer cells floating around his body. Kids like Rett have to battle this disease for two years or more to get rid of all of those cells. The chemotherapy that kills these cells also cause short-term problems and long-term effects...he WILL win the battle, but will probably have battle scars. Rett is a superhero!

 

Life with cancer makes us acutely aware of how precious each day is. Every night that we are sleeping under the same roof is a reason to celebrate. Our family is forever changed by this journey. Most days are filled with JOY…and we are squeezing every drop of joy out of each day. We live each day to the fullest, but we love our lives and feel incredibly blessed.

There is no good cancer. No one wants to live the life we've lived. Even though Rett’s journey has had very few bumps, we wouldn't wish this disease on anyone. A recent study showed that the 5 year event free survival for ALL was 90% and for Rett’s particular type it is over 95%. That is encouraging. Unfortunately, I don’t get to keep 95% of him– it’s all or nothing.

 

The journey is long and uncertain but our faith in God has sustained us and we continue to feel an abundance of God's grace. "And we know that in all things God works for good of those who love him, who have been called according to his purpose." Romans 8:28